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Saturday, January 26, 2013

Down the Rabbit Hole- Part One

My next few guest posts were written by a beautiful, intelligent, and extremely caring friend of mine who- for privacy purposes, writes under the name of Posy. In her posts, you'll hear her also refer to her daughter as Tiny Flower.

These next few posts chronicle a few steps in their journey as mother and child through hardships, revelations, and accomplishments/successes. In this journey we'll hear two parts to this story: Down the Rabbit Hole Parts One & Two, as well as Making the Garden Grow.

Please leave your love in the comments below for Posy & Tiny Flower if you're touched by their story.

Down The Rabbit Hole

“You need to take her to a neurologist.”

Words you don’t expect to hear at a well-check with your pediatrician.

“Her head is very small for her age and she’s delayed.”

Then came, “Here’s a flyer for an Early Intervention program. Give them a call and have her evaluated.”

And down the rabbit hole we went.

You never know what a powerful thing denial is until it smacks the bejebus out of you and then runs away laughing. After that fateful well-check I ran through everything I’d seen in Tiny Flower and everything I knew wasn’t right. And then I beat myself up for ignoring it and telling myself that “all babies develop at different rates, she’s doing fine.”

No, she wasn’t.

It started immediately after she was born. She didn’t cry, she grunted. She had trouble regulating her temperature. Her first APGAR was low and her second was mediocre. All of these things were indicative of something being wrong, but they are also occurrences in “normal” newborns. No one thought anything of it.

We had problems nursing. I was determined to breastfeed. I had imagined the two of us sitting serenely together in the glider as a gentle breeze wafted over our tranquil forms (in the middle of January in the North-East, mind you).

Yeah, the kid wouldn’t latch. A trip to a loony-toons lactation consultant resulted in me pumping every two hours for twenty minutes and recording the amounts and feeding my baby girl with a syringe and tube taped to my finger to teach her how to suck (luckily the tube feeding only lasted a week). I cried every day. I became so obsessed with the amounts that I was pumping I was driving myself crazy. Pumping became a horrifying experience for me and so stress inducing I never really responded well.

Tiny Flower never was able to fully regulate my supply so I would nurse, supplement with formula, pump, lather, rinse and repeat. We made it to 8 months doing that. She never gained weight well. Even with the supplementation. She was a whopping ten pounds when she was 6 months old. We were doing bi-weekly weight checks at the pediatrician for months.

She seemed to have started rolling at seven weeks old. Looking back, she was toppling out of frustration and never developed the muscles to push herself over. It was an occurrence that never repeated. She wasn’t pushing up on her arms, she wasn’t reaching for things. She had little to no interest in toys, she loved watching people and smiling and laughing. She never babbled, only coo’d.

Tiny Flower wouldn’t put her feet down to start learning to bear weight. We’d try and she’d pull those cute feet right up. She was “floppy”– later we would learn that was due to her hypotonia. If put down on her tummy, she’d fuss and complain. Then she would get comfy and take a nap. We just thought she hated Tummy Time.

Socially she was on or close to being age appropriate. That first beaming smile came right around two-and-a-half-months old. Her cooing and responsiveness was on time. She’s been an engaging child from the start. Based on her development in that arena, there was no way that there could have been something going on with her.